So I’m home and the long road of dialysis looms ahead. People seem to be shocked that I now face dialysis 3 times a week 4 hours at a time for the indefinite future. Some people seem to think that a couple of weeks of it and I would be cured. Well no this is it, that machine is keeping me alive. It’s still hard to think that without it I would die. I know I am lucky, without medical advances that would be the case.
Go back to last Wednesday and I went down to theatre very late in the day. I had my blocked graft removed and a new one put in. This one needs to be left alone for 6 weeks to mature before it is ready to needle. So in the meantime I have the lovely pleasure of tubes sticking out of my boob to attach me to the machine.
I lost a whole day somewhere in the process, being so out of it. I don’t know where it went, what I did or where I was. It’s quite scary but also quite a blessing. I also sent some bizarre text messages too which made interesting reading for the recipients. There were concerns I had a collapsed lung or blood clot after surgery as I was in excruciating pain when I woke up (I woke up in theatre instead of recovery but that is a different and embarrassing story). Various tests revealed that it was probably just the position I was lying in in theatre caused the discomfort when I woke.
I’m not going to lie, the past couple of weeks have been hard. The pain has been excruciating, I haven’t been able to get comfy sleeping with the arm on the left and the neckline on the right.
I have suffered extreme vomiting on the dialysis machine and now to top it off I am having to have 2 weeks worth of antibiotics for the start of a possible infection in the wound where the graft is.
But there is light at the end of the tunnel. After 2 weeks in Hospital I am home, I have spent most of the time at my parents as the stairs at my flat are a big issue at the minute, although I have managed one night at home with A which was lovely. I am clutching at the good days and there are still some, I have managed some trips out (even if they are in a wheelchair) and managing to make some fabulous memories.
Yesterday was an absolutely horrendous day. They decided to test me on the machine without antisickness meds, this was because they will be less likely to accept me at a satellite dialysis unit if I require them. Half an hour before the end of my session I needed a bowl but was determined not to be sick. I held it in till I was off the machine and then I could hold no more. I then was sick all day and into the night, struggling to eat and drink anything at all and also not being able to take some vital meds. Safe to say that I won’t be letting them experiment again in the near future, what was really disheartening is that I had had plans to go out (again nowhere to extravagant and in the chair – I’m not to proud to use it if it gets me out and about) and my plans had to be cancelled all because of this experiment.
I’m pleased to say today I am feeling better and my Mum is about to help me wash my hair, it will be interesting as I am not allowed to get the dressing on my left arm or my neckline on the right wet but after nearly two weeks of relying on dry shampoo this will be a luxury. This will also probably wipe me out for the day but it will be totally worth it!
The good days have been far and few between the past couple of weeks but I’m so lucky to have my ‘olds’ A and Buddy to keep me going, keep me smiling and pushing me around the place. Apologies for the extremely long post. I’ll leave you with a few pictures of life recently…